I'm going to share something profoundly personal due to the nature of this thread. 28 years ago a woman was told that due to her advanced age and a rather complicated pregnancy that her unborn child was 99% likely be be born profoundly retarded. There were doubts that the baby, or even the mother would make it through the birth. All of the woman's doctors pressured her to have an abortion, saying it was the only humane and right thing to do.

All I have to say is, thank God my mother didn't listen to her doctors 28 years ago.

No. The purpose of my question is to encourage people to think about what they would do or be able to handle (emotionally, physically, even financially) if they were faced with caring for a severely disabled child. Plus I will admit to a bit of a "put your money where your mouth is" attitude also, and I wanted to know what people actually do if they were faced with the prospect of caring for someone with major disabilities.

Of the people I've ask these questions in person, very, very few have ever even given it a passing thought. The vast majority never consider that the child (or children) they are going to have will be anything other that completely "defect-free."

That view has always surprised me as my family (immediate, aunts, uncles, and cousins) has many members with birth defects including relatively minor problems such as chronic crossed eyes, to severe heart malformations (several members, luckily correctable), to several cases of mental retardation ranging from moderate to profound.

Partially because of what I consider to be a higher than normal possibility of birth defects in my family history, I chose not to have childern. Another reason is that I already have a three-year-old...and have for more than half my life (she's been with me 22 years now -- since her mom died). She is my aunt and is now chronologically 55. She's not particularly difficult to take care of (personal hygiene is completely up to me), but she needs supervision 24/7/365. Now my mom also lived with me and was able to provide supervision (and until several years ago, share in the care of my aunt)...my mom was also disabled (a more progressive condition -- heart failure, intensified by my birth -- whoa! talk about a guilt trip!), so I also helped her (she died in April). There are pretty much no other relatives here, and it is a rural area.

For many years my aunt went to a sheltered workshop, but various negligence/possible abuse issues. She was choked by another client while the aide supposedly watching her - the other girl - was sitting right beside her!, and she broke both legs - in seperate incidents - requiring hospitalization, surgery (both times requiring several plates, screws, and rods), and long rehab periods. Plus the very last straw was a possible sexual abuse incident (but my aunt won't communicate, so it's nearly impossible to prove). So the sheltered workshop is out.

Respite care -- don't make me laugh. We qualify, we can get it paid for...but no one will recommend anyone (and they have to meet certain standards, so if I can find someone will to sit with my aunt that I am comfortable with, I can't get it paid for, because they don't meet the standards). Remember, these are the same people who run the sheltered workshop. I will say there are a couple of people that I trust who will watch my aunt if I really need an occasional time out, but the most reliable of these is a woman who is caring for her husband who is in the later stages of Alzheimer's disease, so that is not really a viable option.

Although many severely disabled infants don't live into adulthood, many do...and can very well out live their parents by decades. It's not just a matter of getting them to college, it's more akin to caring for an infant/toddler for the rest of your life (and trying to make sure the child is cared for after you are dead).

Oh...someone mentioned earlier that thay had never seen an unhappy or angry downs syndrome child...well, I have, and I'll tell you it isn't pretty!

Yeah I know, I quoted your whole post...hehe.

Indra, I work with adults that have developmental disabilites and I HAVE worked with people with down's and yeah they can get VERY grouchy. It's not an easy task at all. It's one that that wear you down, break your back and your spirit. I'm lucky, I get to go home after 8,10 or 12 hours. It's an amazingly hard thing for somebody to have to face.

However, I believe all life is precious and there really is a reason for everything. Can I tell you what? Nope, those kinds of answers are far beyond my reach.

I applaud you for caring for your aunt, you must be a very strong person indeed.

I have to be honest, I would not have a deformed baby, nor adopt one. I am not patient enough, caring, sympathetic, and nor do I have faith in myself to even try. I can't even take care of myself sometimes.
Therefore, I do not have the right to have a child, even if it is a perfect fetus. The child is at risk for neglect, physical and emotional abuse, domestic violence, poverty, drug/alcohol abuse, and improper parenting.
My mother took that risk and I endured all of that torment. Many times have believed I was never meant to be, I was a mistake.
I do not want my child growing up thinking that, or doubting my decision as I doubt my mother's.
Sometimes the cruelty of the life you were born into doesn't seem all that bad compared to being aborted when you can't even remember a thing.
When I think of people speaking out against abortion, I think of this family, a 'perfect' husband and wife, who adopted 5 children, and for years, they starved them, beaten them with a chain, one child had frostbite so bad that he had missing fingers, made them sleep in a small van with no heat in the -40 degree weather while the parents slept in the warm house. And instead of going to school they had to work long ten hour days before they could get a meal. These are children! One was only 3 years old! And she had to find food for herself! Think of these children! What's worse? Living with an empty stomach, working all day, getting beaten, and freezing your ass off all day or simply not living?
I ask you this, all of the sympathetic pro-life people. Think of the MILLIONS of children that are being treated like this, and sadly we don't even know about half of them.

And I think we should do something about prevention, like having drug addicted/alcoholic mothers sterilized or unfit fathers given vasectomies. I think there should be community health programs that offer these sterilizations at reasonable costs, and for lower income families, it should even be free.

What if you learned of this after the child was born? Would the same reasoning permit you to kill the child?

What would I do in such a situation? Care for the child in the best possible way and also sign a DNR immediately. In case you have an issue with that, everyone in my immediate family has DNRs stated clearly in their wills; I do not believe that a person hooked up to a machine, dependent 100% on it is alive any longer.